Happy Registered Dietitian Nutritionist Day!

Did you know that today is Registered Dietitian Nutritionist Day? Each year on the second Wednesday of March, the Academy of Nutrition and Dietetics honors the many contributions of Registered Dietitian Nutritionists (RDNs).  The expertise and dedication of RDNs has a great impact on the health and well-being of their patients and community. If you have a child on the ketogenic diet, you know just how important and valuable it is to have a knowledgeable and committed RDN. If you are grateful for your ketogenic dietitian (a RDN with special training and expertise in implementing the ketogenic diet), today is the perfect day to let them know!

We’d like to give a special recognition to the many dedicated ketogenic dietitians out there, especially our five awesome Keto Ambassadors. Your contributions make a difference in the lives of your patients and the entire ketogenic diet community! Read more about our Keto Ambassadors here: http://www.myketocal.com/ambassador.aspx.

Check out this YouTube video to learn more about the many ways that RDNs make a difference.

KetoCal Supports Rare Disease Day 2015!

KetoCal is a medical food used by individuals with intractable epilepsy who are on a ketogenic diet. Within the category of intractable epilepsy, there are many different seizure disorders, many of which are rare diseases. KetoCal is also used by individuals with rare metabolic disorders that are managed with a ketogenic diet, including GLUT1 Deficiency Syndrome and Pyruvate Dehydrogenase Deficiency (PDHD). Many individuals in our KetoCal community are living with rare disease, so we wanted to take this opportunity to show our support for Rare Disease Day 2015rdd-logo

Below is a list of just some of the rare diseases within the ketogenic diet community. Please note that this list contains only the rare diseases that we are aware of from talking with caregivers and healthcare providers of individuals living with these diseases; If we are missing one that is important to you, please let us know. If you get a chance, please take a moment to click on the links to learn more about these rare conditions.

Rare Disease Day 2015 is on February 28th. To learn more about Rare Disease Day, and how to get involved, visit http://www.rarediseaseday.org/.

Rare Disease: Numbers: Learn more:
GLUT1 Deficiency Syndrome About 500 cases have been diagnosed worldwide http://www.g1dfoundation.org/
Pyruvate Dehydrogenase Deficiency (PDHD) Several hundred cases reported https://www.rarediseases.org/rare-disease-information/rare-diseases/byID/413/viewFullReport
Myoclonic-Astatic Epilepsy (Doose Syndrome) Estimated 1 in 10,000 http://doosesyndrome.org/
Tuberous Sclerosis Complex Estimated 1 in 10,000 http://www.tsalliance.org/pages.aspx?content=2
Rett Syndrome Estimated 1 in 10,000 females (very rare in males) https://www.rettsyndrome.org
Severe Myoclonic Epilepsy of Infancy (Dravet Syndrome) Estimated 1 in 30,000 http://www.dravetfoundation.org/
Infantile Spasms (West Syndrome) Estimated 2-3.5 in 10,000 http://www.infantilespasmsinfo.org/index.php
Lennox-Gaustaut Syndrome Estimated  1 in 50,000-100,000 http://www.lgsfoundation.org/
Angelman Syndrome Estimated 1 in 15,000 http://www.angelman.org/
Landau Kleffner Syndrome Unknown http://www.epilepsy.com/learn/types-epilepsy-syndromes/landau-kleffner-syndrome
Alternating Hemiplegia of Childhood Estimated 1 in 1,000,000 http://ahckids.org/ or http://cureahc.org/

2015 Epilepsy and Ketogenic Diet-Related Event Calendar

2015 CalendarFor today’s blog post, we created a calendar of epilepsy and ketogenic diet-related events taking place throughout 2015. This includes various conferences, fundraisers and patient group awareness days. These are only the events that we are aware of, so we hope that you can help us add on to this calendar. If we are missing your group’s event, please let us know so that we can include it. Please add a comment below this post or send us an email at myketocal@nutricia.com.

January

February

March

April

  • Keto University (for dietitians)
    April 27th– 29th
    San Diego, CA

May

June

July

August

September

October

November

December

Keto Highlights of 2014

2014 Highlights

As we finish the final days of 2014, today’s KetoConnect blog post looks back at the highlights of 2014 for the ketogenic diet community.

International Conference:

The highlight event of 2014 was undoubtedly the International Symposium on Dietary Therapies for Epilepsy & other Neurological Disorders, which was hosted by Matthew’s Friends in Liverpool, England. Around 270 healthcare professionals, scientists, and parents attended the first International Symposium on Dietary Therapies for Epilepsy & Other Neurological Disorders, which was held in 2008 in Phoenix, AZ. This year’s symposium had nearly double the attendance with roughly 500 attendees from 27 different countries.

Global Growth:

The use of the ketogenic diet continued to expand geographically in 2014. As mentioned in the paragraph above, this year’s International Symposium had attendees from 27 different countries! In the August 2014 issue of Keto News, Dr. Eric Kossoff discussed the global growth of the ketogenic diet, which is now offered in at least 60 countries!

More Research:

Research interest in the ketogenic diet has increased tremendously in recent years and the trend continued into 2014. There were more scientific articles on the ketogenic diet published in 2014 than ever before. The graph below shows the steadily increasing number of publications on the ketogenic diet, with a whopping 172 articles published in 2014 (along with 13 articles e-published ahead of print in 2015)! As Dr. Eric Kossoff discussed in his recent Keto News article, there has never been more research interest in the ketogenic diet. It is a very exciting time for our community!

Source: Pubmed.gov

Source: Pubmed.gov

Increased Online Interest:

In addition to the trend for increasing research interest, there is also a trend for increasing online interest in the ketogenic diet. Google Trends allows you to compare online interest in certain topics over time based on how many people search the Web for that topic. As you can see from this graph comparing online search trends over the last 10 years (below), there were many people searching for the ketogenic diet online in 2014!

Source: Google Trends

Source: Google Trends

Loss of Dr. John Friedman:

The ketogenic diet community mourned the loss of Dr. John Freeman in 2014. Dr. Freeman was an internationally renowned neurologist from Johns Hopkins University who revived the use of the ketogenic diet for epilepsy. Dr. Freeman’s contributions live on in the many patients that he helped.

New Keto Ambassador Program:

Nutricia North America launched a new “Keto Ambassador” program in 2014, connecting expert ketogenic dietitians with less experienced dietitians for support and guidance. In 2015, the Keto Ambassadors will host the first ever “Keto University” for dietitians!

 

For more 2014 highlights from our friends across the pond in the UK, check out the 2014 project summary from Matthew’s Friends.

Happy New Year, everyone! We’ll see you in 2015.

-Mallory

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Special Post for Epilepsy Awareness Month

As many of you know, November is National Epilepsy Awareness Month, so today’s KetoConnect blog post is a special Epilepsy Awareness edition. Read below for an overview of Nutricia’s Purple Day for Epilepsy Awareness and to view our new infographic to help spread awareness about epilepsy and the ketogenic diet.

Nutricia North America Purple Day for Epilepsy Awareness:

Last Friday was “Purple Day” here at Nutricia North America. The KetoCal team committed to donate $5 for every Nutricia North America employee who wore purple to work for epilepsy awareNNAPurple2014ness. It was a sea of purple in the office and our internal social media site was flooded with photos of employees across the US and Canada sporting purple. We were so impressed by everyone’s enthusiasm that we decided to double the funds raised.

Friday’s fundraiser will be used to sponsor a child to attend Camp Great Rock, a camp specifically for children and teens with epilepsy. Great Rock campers get a chance to experience the joys of summer camp in a safe environment, under the medical supervision of the Neurology team from Children’s National Medical Center, our local children’s hospital here in Washington D.C.

Epilepsy and Ketogenic Diet Awareness Infographic:

Also in recognition of National Epilepsy Awareness Month, we created this Infographic to help spread awareness about epilepsy and the ketogenic diet as an option for those with intractable seizures. Please feel free to share, pin, post, and spread the word!

How are you recognizing Epilepsy Awareness Month?

-Mallory

 

Ketogenic Diet jpeg

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Summary of the 2014 Global Symposium for Ketogenic Dietary Therapies

We’ve just returned from Liverpool, England where we attended the 4th Global Symposium for Ketogenic Dietary Therapies for Epilepsy and Other Neurological Disorders, hosted by Matthew’s Friends. Our brains are full of new and exciting information, so for this week’s blog post, I thought I’d share an overview of the conference with you.

As mentioned, this year’s Global Symposium was held in Liverpool, UK and hosted by Matthew’s Friends. For those of you not familiar with Matthew’s Friends, it is a charity based in England dedicated to spreading awareness and providing access to the ketogenic diet. It was started by Emma Williams, mom to Matthew, whose seizures and quality of life improved on the ketogenic diet. The mission of Matthew’s Friends is very similar to that of the Charlie Foundation here in the US, and the two groups often work together (The Charlie Foundation hosted the last Global Symposium, held in Chicago in 2012).

The Global Symposium consisted of 4 days of presentations for health care professionals, followed by a family day for families of children on the ketogenic diet, some adult patients on the ketogenic diet, and some individuals who are just interested in learning more about it. There were 5 of us from the US KetoCal team who attended the symposium, in addition to our KetoCal colleagues from the UK, Germany, Netherlands, and Spain. KetoCal had a booth in the exhibitor’s hall and as always, Chef Neil wowed visitors with his KetoCal recipe creations. We were excited to see our fellow US buddies from the Glut-1 Deficiency Foundation in the booth right across from us!

Day 1:

The conference kicked off on Tuesday with a dietitian’s meeting in the morning, followed by the opening sessions for the professional program in the afternoon. After the close of the sessions, Matthew’s Friends hosted a Welcome Reception where everyone could catch up with old friends and meet new members of the global keto family.

Matthew’s Friends created awesome video overviews of each day of the conference. Here is the video of Day 1.

Day 2:

Wednesday morning covered utilization of the ketogenic diet for specific epilepsy syndromes, including Dravet Syndrome, Doose Syndrome, Infantile Spasms, Status Epilepticus, FIRES, Angelman Syndrome, and Tuberous Sclerosis. In the afternoon, we heard presentations about the possible “mechanisms of action” of the ketogenic diet (or for those of us who are not doctors, we learned a little about how and why the diet is thought to work). That evening, we got to visit the Museum of Liverpool for the poster session. This was one of my favorite parts of the conference- Researchers from all over the world displayed posters presenting their brand new research on the ketogenic diet.

Watch the Matthew’s Friends’ video summary of Day 2 here.

Day 3:

On Day 3, researchers discussed secondary effects of the ketogenic diet, such as the diet’s effects on cognition, learning, behaviors, and bone health. Dr. Kossoff, who some of you may know from the Ketogenic Diet Center at Johns Hopkins University, talked about the long term use of the ketogenic diet. Next, a group of ketogenic dietitians talked about the clinical implementation of the ketogenic diet. The afternoon sessions focused on “optimizing utilization” of the diet. The presenters talked about utilizing the diet in specific age groups, including infants and adults, and in specific situations, such as for patients in status epilepticus. Emma Williams presented on ways to better support families and prepare them for managing their child’s ketogenic diet. That night, we had the privilege of attending the Matthew’s Friends Charity 10th Anniversary Gala Dinner. We enjoyed some great food and an awesome Beatle’s cover band (when in Liverpool!).

View the video summary of Day 3 here.

Day 4:

We started Day 4 of the professional conference with presentations on using the ketogenic diet across different cultures and settings. Next, we learned about the ketogenic diet for patients with mitochondrial disease and specific metabolic conditions, including pyruvate dehydrogenase deficiency and Glut-1 Deficiency. In the afternoon sessions, we learned about research being done on the ketogenic diet for cancer, a new and exciting topic for the ketogenic diet community. We ended the day with discussions about the future of the ketogenic diet and the announcement of the 2016 Global Symposium, which will be held in Banff, Canada!

Watch the Day 4 video summary here.

Family Day:

Family Day is always my favorite part of the Global Symposium. It’s exciting to meet families and learn about their ketogenic diet stories. In the morning, presenters gave families an overview of the presentations from the professional sessions. In the afternoon, we broke up into workshops for specific areas of interest. Between sessions, Chef Neil made some amazing KetoCal recipe creations for families to try, including some popular British foods, Scotch Eggs and Yorkshire Pudding! The UK KetoCal team launched some new KetoCal recipe books. There’s one for a 4:1 ratio, 3:1 ratio, Modified Atkins Diet, and MCT Ketogenic Diet.  Families got to take one home and they were a huge hit. We are in the process of putting some US versions of the recipe books together so keep an eye out for them in the next few months!

See the video summary of Family Day here.

Well done, Matthew’s Friends, on a very successful, informative, and fun Global Symposium. We are already looking forward to seeing everyone in Banff in 2016!

-Mallory

Below are some photos from the week.

Big News: We Have a Blog!

BlogWe are so excited to announce our blog, KetoConnect, an online resource for parents of children on the ketogenic diet for epilepsy. The purpose of KetoConnect is to keep keto moms and dads informed of the latest news and events, while sharing useful tips, recipe ideas and resources to support you in managing your child’s ketogenic diet. We hope KetoConnect will provide support for parents at various stages of their child’s ketogenic diet journey, from the time they start considering  and researching it, to the time their child is weaned off of the diet.

KetoConnect is written by a team from Nutricia North America, the makers of KetoCal®, so we will provide parents with useful information, tips and recipe ideas related to KetoCal. However, the goal of the blog is to provide support for the ketogenic diet in general so our posts will cover a broad range of topics. We’ll even have parents and health care providers as guest bloggers to provide a variety of perspectives. Please let us know if you are interested in contributing!

Starting next Tuesday, look out for our weekly blog posts. We hope you’ll join the conversation and welcome your questions, comments, topic suggestions, and feedback!

-The KetoConnect Team

Photo: Flickr user xioubin low